I’ve been struggling, friends, on so many levels that I’m almost not sure where to begin with this post. The struggle is multi-layered, of course, because you wouldn’t expect an over achiever like me to have it any other way, right?

There’s the usual MS-summer struggle where the weather, the very air itself, conspires against me with her buddy the sun to render me physically useless if I even get an idea about going outdoors.

I’ve gotten to the point where even the porch can be too much when the highs are near 90 degrees with humidity to match. The dew point reached 75 at one point here in the last few weeks and if you’re anything like me, you realize that the dew point is the boss of you. Anything above 60 and I’m uncomfortable. Over 65 and I’m barely functional on the vertical plane. Over 70? Stick a fork in me. I’m double done, overdone, done to the nth degree. DONE. I probably have at least another month of this weather if Septembers of Pittsburgh past tell me anything. So, there’s that.

I feel like I’m living in Satan’s ass crack, people. It’s not cute. It makes me surly. It zaps my will to live. I see the sunshine and it makes me want to open a vein but I merely crank down the central air, don my fuzzy socks (because inexplicably cold feet? I mean, what the ever loving eff?!) and cry while binge watching yet another show on Netflix.

I joke. I kid. But you also know how this kind of inactivity and home-bound reality can really work on a girl’s psyche. I’m more dark than bright these days, thanks to that bright yellow ball in the sky that hates me. I find myself crying for no good reason. I cry while watching The Handmaid’s Tale on Hulu because I find myself relating to June’s level of hopelessness. When you relate to Offred, you should probably consider taking inventory of your life, amirite? Offred is trapped in Gilead. I am trapped in this broken-down body that keeps breaking down even more almost in front of my very eyes. I almost can’t believe how fast this is happening! I thought progression was a slow game like golf or watching paint dry. This progression is more like a luge ride to Gimp Town and I’m screaming my head off for someone to get me off of this crazy ride but nobody seems to be listening.

There’ve been some major developments (read: new lows) on the disability front that have led to me acquiring several new toys.

One of them is a portable potty chair that sits in my dining room under a less than discrete table cloth, openly mocking me with its nursing home rubber feet sticking out from beneath my grandmother’s antique linen. I resisted using that thing for the longest time. I cried the day my mother brought it into my house. We’d gotten it for my dad when his illness got really bad before he died. He never used it since it was easy for him to pee in a bottle but I’ve not mastered that skill and on one particularly bad leg day where I couldn’t stand let alone do steps, my mom saw this addition to my home as merely practical. Handy, even (pun fully intended). I wanted to set fire to it the minute I saw its metal frame, it’s white plastic bucket and its handy white plastic seat – neutral so as not to clash with my eclectic, colorful, carefully curated décor.

Each day that passed without peeing in the bucket, er, using the downstairs loo, felt like a victory. I’d drag myself up those steps with my last breath! I resisted the convenience of the first-floor bathroom for almost three weeks before I had to give in and swallow what was left of my waning pride. It happened that day when I had waited just a hair too long to begin mounting the steps and I was on the second step when I knew it wasn’t going to work. I instantly began imagining the devastation of peeing on the steps resulting in me needing to clean up myself AND my rug after peeing buckets in a place decidedly not a bucket. That day I sat on the port-a-pot and cried (again) but I didn’t have the energy for cleaning up my own pee from my own stairs so…choices were made. Nothing like emptying your own pee bucket to put a girl firmly in her place.

I’ve had more than one supportive friend covet my first-floor facilities, mentioning how they’d like one of their own just for those times when a weak pelvic floor makes getting to the actual bathroom a race against time. I don’t even think they’re saying this ONLY to make me feel better but only partially to make me somewhat less despondent. Yes, I’m still working on the long-term renovation plans but guess what? Renovations take time to even get started let alone completed and your girl has legs that seem to become less reliable by the day. So yeh. Another lesson in patience?

Things either happen too fast or too slowly in this new life of mine. Irony is my homie.

One of my new toys hasn’t arrived yet, and that would be my shiny new EZ Lite Cruiser (deluxe, of course, because I am nothing if not mildly extra). That bad boy should arrive any day now and I can hardly wait! First, to learn how to drive the damn thing (“I can tell you, m’am, that we have very elderly customers who have no trouble at all maneuvering their units after a little practice and you sound quite young so you should be a-ok.” Um. If anything sounds more like famous last words I’m sure I can’t imagine what those words would be). Then I have to figure out how to get it into and out of my ridiculously impractical vehicle (“There’s a photo on our web site, m’am, where you can see the unit folded up in the back seat of a BMW convertible – you’re going to be just fine.” Ok, Skippy, and you can stop calling me m’am any time now.

I partially funded this extravagance by using a thousand-dollar gift card I was generously given by my company for an award I was given for demonstrating grace under extreme pressure and horribly declining health while keeping the doors open and our little office afloat (the actual award wording was much nicer and more touching than I am doing it justice here).

I wanted to spend that grand on something obnoxious and bougie like a fancy new backpack or some extra special orthopedic shoes but getting a nice break on my new wheels seemed like a wiser decision. Being disabled ain’t cheap, y’all. I’m fortunate to not only be employed but employed by a company who gives me amazing recognition and ridiculously generous gifts for just doing my job. I’m naming my new wheels “Fitzy” after the name of the award, so named for the courageous woman for whom the award was created, my boss Linda Fitzsimmons. That woman is an angel who has overcome some pretty amazing obstacles of her own.

I’m going to try not to resent Fitzy too much. I’m actually kind of anxious for her to arrive. I can only imagine the hijinks that are sure to ensue once I’m set loose on the able-bodied world in my hot new wheels. I hope not to injure myself or others but I make no promises. I am considering outfitting Fitzy with a GoPro so we can have actual video evidence of my adventures. I’m afraid that once I get my ass in that chair I’m never going to be able to walk again but I’m learning more about how to view my utilization of energy and it’s even possible that using this chair will give me more energy for learning to walk a bit better. I mean, that’s what disabled bloggers much wiser than me say about the whole chair thing so I’m going with it.

I’m going to need that energy because I have a whole slew of appointments coming up to address a whole bunch of annoying shit that I’ve been avoiding for far too long. First, I’ll be going back to physical therapy in the next week or so but this time I’m going to aquatic therapy and I’m kind of pumped for that. I mean, that might also be hilarious – I’m told there is some kind of harness/lifting gizmo for getting a gimpy old gal like me into and out of something called the AquaArk where I will be doing my strengthening exercises. I am giggling just thinking about this. I envision “wide load” signs attached to my ass and those beeping noises that big trucks make when they back up. Even better is that this new PT location is right in my neighborhood and won’t take all of my energy just to get to the facility. So much winning!

My primary care doc is sending me to see a Sports Medicine specialist (stop laughing…rude) to address the literal pain in my ass that has been plaguing me for the last few months. This pain is no joke, friends. It keeps me from sleeping. It wakes me up once I finally get to sleep. It hurts when I sit so my days are a constant loop of jumping up and down from sitting to standing and back again which is frankly exhausting. When I’m sitting chances are I’m sitting on a cold pack in an attempt to get some relief, relief that never comes. It makes working difficult (I spend a lot of time on a computer for my job). It also has made writing difficult – I’ve not quite mastered the writing while standing thing. Right now, my left ass cheek is frozen and throbbing with pain all at the same time! But you guys are worth it. I will deal with pain for my art! Imagine me shaking a slightly numb fist at the sky…

The numb hands thing is also a new thing and it makes typing difficult. I know I could use talk-to-text or Dictaphone technology or whatnot but I have to be honest. Writing for me is typing. Words seem to come out of my fingers not out of my brain. I know that sounds crazy but it’s how it feels. When I write using my hands, the words come out in quasi-sensible fashion. They don’t work as well when they come from my mouth. It’s like I need to see them on the page as my fingers peck out my thoughts for the words to actually make sense?

Maybe the real challenge is that even with the physical barriers to writing, there’s a bigger barrier still and that is the fact that I don’t really want to write about any of this. This blog started out as a way for me to work my way through diagnosis and early treatment. In my mind, the narrative arc was obviously about how hard this whole MS thing was, but look! I’ve triumphed and you probably can too! Go MS Warriors!

But that’s not how this whole thing is playing out, is it? My writing has devolved into a way-too-personal diary of my ever more depressing physical decline. I continue to be amazed that anyone wants to read it! My family, in particular, will be horrified by how personal and detailed the whole pee bucket expose is in this post. But that’s literally all I have right now. My life continues to be consumed by my decline. I keep trying to find the bright side, the grace, the gratitude to turn lemons into lemonade and I keep failing. I used to tell myself that this writing was important because people need to know how bad this gets. People need to know how horrible things happen to good people for no apparent reason and they get through it. They figure it out. Someone might feel less alone, maybe. Someone might read my ramblings and feel seen. This has to be worth something! Something needs to come out of this.

I’m not so sure anymore.

I’m sure once my ass pain is figured out and once I get more Botox in my legs at the end of this month and once I start swimming my way to ever stronger legs and wheeling my way out into the world a bit more on days when my legs don’t feel so strong and my hands decide not to be numb anymore or a miracle occurs and I suddenly start cranking out lemonade by the fucking gallon and it’s October and finally not hot anymore… I’m sure once all of this happens I will feel inspired to write about it again and it won’t all feel so goddamned futile. I will love writing again. I will be funny and entertaining again. Pithy and sage. Wise beyond my years and chock full of inner peace. I will be ready to wow the world with my laser sharp insight and wit.

Until that time, you’ll probably get a bit more of this overly personal, mental diarrhea about my ever-shrinking life. That sounds fun, right?